More than ‘just’ a garden…

BW Front Garden

Last Friday, the 15th July, was a special day in the lives of the staff, volunteers and residents at the Nursing home where I now live. 2 years of hard work from a committee, local businesses, National Citizens Service (16 yr olds who volunteer) and many others who I’ll never meet, had been leading up to this day…

The (Front) Garden Reopening

Most of my housemates and I made a special effort to dress up… wearing out the staff who assist us! The volunteers were kitted out in T-shirts bearing the name of the charity who has overall responsibility for the home, and extra staff volunteered. There were even distinguished guests: a mayor and mayoress (very lovely, kind-hearted people) and a representative of Her Majesty The Queen, a Lord Lieutenant (who to my surprise was a female) not surprisingly accompanied by a small entourage, and two local MP’s. Not forgetting the children’s choir from a local junior school, and a samba band! 

Unfortunately, the sunshine didn’t really appear until mid-afternoon. Just in time, thankfully, for the, re-scheduled speeches from most of the distinguished guests, the garden committee and the home’s manager.

I’d been unable to resist my natural role, that of a social butterfly, despite fearing the after affects. I swallowed my fear with a silent prayer and carefully maneuvered through the throng, introducing myself rather cheekily, as the youngest resident. This feigned confidence helped me to continue as I’d started despite tiring fast… Making enough of an impression to be mentioned in dispatches by one of the local MPs… He explained the difference the new space would make to someone like me with friends who live some distance away. Any visits need to be made the most of, to keep friendships strong and vibrant.

Silver plaque with engravings
The names of those who opened the garden or contributed in some way

Given the late appearance of Sumner, it’s been very hot with more than some humidity in the home. Whenever I could manage some time outside the home the new space really helped, especially since two good friends made seperate visits this week. We’d somewhere to go that I could eaisly navigate and chill out in while topping up our vitamin D and catching up on each other’s news.

Healthwise, this has been the best week since I don’t know when… no doubt due to the weather and great company. Not forgetting, of course other outings to a local church with my key worker, lunch out with a different member of staff and a lunch out with my parents. 

Of course, I’ve written this post while in the garden, but this time sat under the shelter of the gazebo, watching the weather turn sunny from light rain, and back to cool gray skies. I’ll leave you with some of my photos of the view. Until next time…

From a modern flat to a big, old home….

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A recent photo of me with my nephew, taken in my new room in Nursing Care facility where I now live. 

From ‘independence’ to full-time Nursing Care

In the last little while, I’ve moved into residential care. Not a decision I took lightly but living independently was seriously endangering my mental health. Respite was arranged in a hurry as I desperately needed a rest. A few days after my arrival, I was a different person. I’d had more sleep then I’d had in a very long time, in part due to sleeping on a specialist mattress to try to ease some of my pain. I’d had proper meals, and help with the projectile stoma output which had been giving me so much grief at all hours of the day and night. I very quickly made friends, and there are as many activities available as possible given that the home is maintained by a national charity, and as such, relies heavily on volunteers. I did play more than one game of scrabble that first week, which I loved.

At the end of the week, I hadn’t heard if there were any changes to my care plan at home and I knew I couldn’t go back for any length of time and not get in the same mess. I knew deep down there was no money for any more care at home. Long story short, I’m now in residential care full time. I’m much happier, certainly safer and healthier than I was living on my own, latterly.

Disconnect in Well-Connected Times

Of course, as with any move, there will always be teething problems. These have become apparent very quickly. The manager is trying hard to get something done about the sweltering heat, and the problems with water. The care I have is generally absolutely brilliant, especially now people have had time to get used to the idiosyncrasy of doing stoma care on my behalf. I may have startlingly high levels of pain and fatigue, and the medication needed to manage these has it’s own side effects. Staff have begun to recognise the signs, and remind me to rest often. I am slowly developing my own routine in amongst my varying levels of health. I love visitors and thrive on being around people.

There’s just a weeny problem. The house is old, and has been extended. The house has been blamed for the non-existent Wi-Fi in upstairs rooms but that was only part of the problem. Finally, a solution has been suggested and will hopefully be implemented fairly swiftly. It needs to be. After all, personal care and support is paramount, but access to social support, which arguably includes Wi-Fi is nearly as important. I look forward to the day when I can skype when I chose to, including family as well as my therapist. I am almost wholly dependent on social media for keeping in touch with my wonderful friends, who I really miss, as well as church family and blood family. I also rely on Wi-Fi to conduct research for blog posts, and find other sits to write for. Being a girly girl, I make occasional purchases too.

My life has diminished enough without losing touch with people or losing the blog altogether. These are crucial contacts for my own sanity, some of whom offer online support with my chronic illness and disability. Why should any of this have to suffer simply because my circumstances have dramatically changed? It’s time residential care caught up with the times!

Over to You:

Do you think WiFi access is important in today’s world? Why, or why not?

Do you live in supported living, residential care or a nursing home, is Wi-Fi access considered a priority? Should it be?

Do you have any other comments to make. Perhaps you disagree with me. I’d love to hear from you!

In recent weeks, I….

Hi everyone, here I go with my latest attempt to kickstart my blog after some months of absence. Finally, finally, I feel ready to start writing regularl
y again. Hopefully, I’ll manage to post three times a week. For now, lets revisit the last few weeks in my world! In the past few weeks, I:

Have been concentrating on all the basics.

For me, this has meant more than just getting to the end of each day in one piece. Just getting from one hour to the next has often been a challenge, either because of a much disrupted sleep the previous night from insomnia, pain, (be it joint, stomach, or back) or due to my my highly functioning stoma, meaning I am up to empty it several times a night, despite using an appliance with one of the largest available.

If I settle down for a nap the following morning after a bad night, one hour, even two is never enough. And yet, keeping going is not an option either, as I am extra uncoordinated, clumsier, and even less able to think straight than usual. The problem is, after such a long nap, I have no inclination to write.
Additionally, i’ve had never-ending lists of admin, be it phone calls, emails to write, forms to fill… Unfortunately, these things have not been the only difficulties.

Have been confined to one room, for the most part.

After all that busyness, I am exhausted. This has been exacerbated, at least for the last six weeks, because of the unreliability of my electric wheelchair, meaning that even sitting still is hard work, as I need the support which I have from the pressure cushions on my chair, to enable me to sit up comfortably with less effort, less pain, improved balance and posture, and without putting undue stress on my back, which is already incredibly sore most days. Even when my wheelchair has been returned after being away for repair, I’ve been lucky to get the use of it for a full 24 hours without it stalling. As it is, it has stopped altogether, and is awaiting collection for the the fourth time in six weeks. How do I manage without such vital machinery? The truth is, I don’t! For the vast majority of this time, I’ve been confined to one room, usually my bedroom, as I have a profiling bed. This means I can press some buttons to adjust the mattress (in this case, a high-pressure one) to more effectively support my posture, and change my position when I am uncomfortable or in pain, without actually having to move my body. I am incredibly grateful to have access to such equipment, as without this I would be in constant unrelenting agony.
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Fortunately for me, I have occasionally been able to leave the house in my (ill-fitting, too small and unsupportive) manual wheelchair if a carer, family member or friend has time to help me. This has mainly been for hospital appointments or the food shop. I’ve been unable to attend church in this time, as spending long periods of time in this manual wheelchair has done, and would do much more harm than good. While I am awaiting a permanent fix or replacement for my electric wheelchair, the confinement continues.

Have begun a tailor-made eating plan!

What am I doing with my time now I’m even more restricted than usual? In part, I’ve used the
time to plan food shopping, cooking and eating meticulously. In partnership with my dietician, I am eating much more lean protein to help fill me up without added bulk (or calories) in smaller, more regular meals and snacks. Due to my unique circumstances we’ve had to devise inventive ways of including all necessary vitamins and minerals in my diet, without me having to prepare, cook, eat and attempt to digest lots of fruit and vegetables, for me to struggle to absorb the nutrition anyway due to the shortness of the piece of gut I have left, and reduce the risk of blockages in the stoma, or over-filling of my ostomy bag. What a challenge! (Apologies if you were eating while reading this!) With help from care staff, also I’ve been using a reasonably comprehensive soluble vitamin and mineral tablet on a daily basis, to boost anything I am managing to absorb. As recently as the last few days, on advice from a GI consultant, I’ve recommenced a fluid restriction in combination with a litre of dioralyte daily (rehydration salts and electrolytes). All of this, though effortful is giving me more energy, helping me lose weight by reducing the temptation to snack or comfort eat, and generally feel better about myself. The results are also evident in regular blood tests. A long hard slog rather than a quick fix, but will all hopefully eventually be worth it.

4. The once gaping wound in my abdomen is no more!

Said wound has finally healed, though it needed loads of TLC and took an arduous five months to heal, some 3 months less than my fantastic surgical team expected. My surgeon himself, had some doubt that the wound would ever heal completely, but at a joint medical/surgical appointment last week, it was lovely to be able to tell in person that it had. The doctor said I made the surgeons day. I’ll bet they were glad to have good news for a change, especially given my prognosis and the miracle that I am here at all. As a Christian, I believe that ultimately God has orchestrated this healing, though other factors have undoubtedly helped including keeping the wound free other than the pre-existing infection on the outside of the wound, keeping it clean, and mostly dry, even while washing my hair, no mean feat in itself!

What else have I missed?

I have spent time doing the things I love again: cooking, baking, reading everything from ebooks on my kindle app on my smartphone, blog posts, news articles, catching up with friends family over occasional coffee or meals at home, or even more occasional meals or coffees out when accompanied. I’ve participated in church services online through skype and facebook, and even led my first one last Sunday. A separate blog post on that is to come. In the meantime, contact Dave Roberts to find out how to get involved in VOWchurch if you would live to, or even if you would just like to find out more.
Also on Facebook, I’ve joined a campaign called “Get Your Belly Out”, begun by four amazing yet ordinary girls seeking to raise awareness of Inflammatory Bowel Disease (IBD), raising money for a cure, and building up a loyal, friendly, support community in the process.
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Lastly, I’ve participated in a webinar (a seminar on the web) or how to write memoir, tips and tricks to use, and what to avoid! This was organised by Writer’s Digest, and run by an agent in America on a weekday lunchtime, broadcast all around the world to aspiring writers in various time zones, 6 pm in the evening, in my case! I managed to stay awake (hurrah!) content rating for virtually the full 90 minute seminar, having learned lotads. I’m now working on the 1500 words to email to the agent, due in a mere 9 days (eeek). On that note, I must scarper!

2013 in review

The WordPress.com stats helper monkeys prepared a 2013 annual report for sat n’ all that, with some surprising results, which you can read for yourself below:

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 4,800 times in 2013. If it were a NYC subway train, it would take about 4 trips to carry that many people.

Click here to see the complete report.

One day, one post had over 300 views, and many more on other days. One of my highlights of 2013, for sure. Other highs and lows of 2013, as posted on my FB page today include:

two new hair colours, pierced my nose, turned 30, had the most amazing party with wonderful friends and family, (lots of whom made special efforts to be there) fell deeply in love for the first time but had my heart truly broken, learned all over again what it is to trust God with an unknown future, learned how fantastic some of my fabulous friends are, had an exciting Skype conversation with an establish Christian author who thinks my writing is “fantastic”, learned all sorts about myself… faults too, and made constructive goals for 2014… going forward with my hand in the hand of the One who loved me and gave his life for me…

Here’s to the hope of a new year, going forward in faith with joy and peace, showing God’s love to all who cross our path. Glory be to God’s amazing grace, of which I shall write of in this coming year, with many more topics besides! Thank you for sticking with me, and let’s raise a glass to all that’s to come in 2014!

Mirror, Mirror (2)

Mirror, or vintage iPad (thanks obni)
Mirror (Photo credit: christing-O-)

A comment left underneath the post I wrote about Standing Out Sitting Down said how insightful the post was, which has given me some confidence to attempt this prompt from the 14th August:

Think of your blog as a mirror: what does it reveal? Consider your blog name, theme choice, design, bio, posts… what does every element tell you about yourself?

The title, ‘sat n all that’ was actually thought of by someone else. One of the carers, actually who I don’t see now but they used to have loads of shifts with me. The blog started as a project to take my mind off things round the time I was struggling to adjust to changes in my circumstances, and to give me another purpose to my day. I find it a little easier to think of titles now, but found it impossible in the beginning. The title started off as ‘I may be sat, but I’m all that’, but I felt it wasn’t snappy enough, and wanted to write about more than just being sat in a chair, or only about disability issues. After all, my life is more than these things. My life is not nearly as varied as I would like; ‘special someone’ is no longer on the scene, I am unable to work, and I’ve even had to cut down on the blogging, to keep up with it. However, I have amazing friends, a great church family, and have more interests now, so do still have variety of people of things important to me to write about.

The design started as something else, though I can’t think what it was now. When choosing a theme, I wasn’t really bothered about the aesthetics. I wanted something clear and easy to read, so as wide a range of people could get access to it as possible. As ‘barrier-free’ as it could be without designing a site myself from scratch, as a few friends use screen reading software, and I wanted anyone who read it to be able to get access to it on whatever device they use to  surf the web. That says a lot about me, really. I’m an open, friendly person, and I find a lot of purpose in reaching out to others, in whatever small way. Plus, a lot of disability access is  an afterthought, and not from the outset, and I wanted to think about it from the beginning.

The theme is trickier. I like the idea of being a ‘niche’ blogger, and I guess I am in some ways as I write about disability, or faith, or more often, disability AND faith, together. Both are integral to my life, and intertwined in many ways. My faith in Jesus is central to helping me cope with my challenges, and my challenges deepen my faith. I didn’t want to write narrowly on just one theme, as I lacked the confidence to think I could come up with posts easily enough on just one theme… plus, as I say, I couldn’t really separate the two, so I am much happier with a ‘hybrid’ blog. I think, now the blog is a year old, and though there have been stretches of about a month at a time where I have written little, I am more comfortable with the themes I write about these days.

If you look at the ‘tag cloud’ to the right of a post, the topics I write about most are in bigger letter than subjects I write about less often. At this time, the topic in the largest lettering of all is ‘disability’. I am not entirely comfortable with that, as there are so many bloggers out there with a disability, people who have campaigned for years, advocated for others, been active in politics, and really know their stuff. I feel so intimidated by that because I worry so much that their writing on disability issues is so much more informed than mine, and what right have I to write about it so often when any of them can do a better job?

This is partly a complete lack of confidence, and a desire that if I bother to write at all I want to write informed, quality content; otherwise, what is the point? I guess it is partly about perspective too. It sounds idiotic to point this out, but obviously no two people who live with a disability will have the same views even, on their disability, so it stands to reason both will be able to offer different perspectives. I find it absolutely unbelievable that my most popular posts have been disability related.

The first post to which substantially more people read, and the first shared more widely, was one I wrote at the end of last year, about David Cameron’s speech at 2012’s Party Conference. Specifically, focussing on two little words he used: ‘Compassionate Conservatism. Now, a complete oxymoron…!! This particular post was also (he claims!) read by my MP, – WOW! My most popular post ever, I wrote very recently, about not being able to work, and trying to address the popular thought that if some severely disabled people can work, then why can’t every disabled person do likewise. To my amazement, this post was shared around upwards of 100 times, and has been viewed 400-500 times, at least! I’d never have thought my most popular post would be about these things, rather than something completely personal or something faith-related that I feel I know more about. I suppose I just am ‘myself’ when i write, as much as anyone can be, of course.

Another post read a lot is ‘The days that changed my increasingly complex life.‘ It was the first time I wrote about something really personal, and what I thought and felt about it too. The reaction to it really surprised me, as some people got a lot out of it. Those kind of posts seem to be the ones that really strike a chord with people; again, something that surprised me. It was reasonably natural, though tough, and painful, to write about, as I am very much a ‘heart-on-my-sleeve’ person. In some ways, the people who read this blog have shaped what I write about.

I used to answer more of the ‘daily prompts’ provided by WordPress, as i lacked the confidence, and often the inspiration, to come up with my own topics. This has got easier as time has gone on. Also, given the squeeze on welfare claimants that is about to get so much worse, the stereotypes peddled by the Government, and some sections of the media, and the ‘hot potato’ that is the Welfare State, the topics offer themselves at the moment, and it is also topics that are a big part of my life, whether I want them or not. No benefits, no money, therefore no independent life. As my Mum says, they didn’t bring me up to sit on the sofa for the rest of my life… so I really value the semblance of a life that I do have, and it gives me much more to write about than if I sat on the sofa the majority of the time!!

When I was 10…

Dream
Dream (Photo credit: Xtream_i)

I don’t actually remember what I wanted to be when I was growing up. It took me until the age of nine to be walking unaided without any supports on my legs! At that point, I just had arch supports in my shoes, which I hated so much I refused to wear them. They did hurt my feet terribly tho!

If I remember back to playground games with my friends or ‘imaginary play’ indoors, from what I can remember most of it involved pretending to teach. I do remember filling in a long form in my final year at school which was sent of, my answers were analysed, and the careers advice they gave was that my personality and gifts were best suited to teaching. The careers adviser pointed me towards Stirling University, who at that time were the only Higher Education Institution offering the Bachelor of Education certificate alongside an ordinary arts degree. As I have blogged before, I did go on to do this course for three years. Despite giving it my all, I subsequently failed and was chucked off the course. The emotional fallout and impact on my life, and my dreams was devastating. If fact, it’s not too dramatic to say it was actually life-changing, one of five days to be so.

Fast forward about eight years, and my life has totally changed. Any childhood dreams are in tatters, as I am now unable work, and my life revolves around visits from carers, nurses, trips to hospital for appointments, home visits from specialists, and form filling. This blog, my family and friends, and my church family are the bright spots in an otherwise ‘ground hog day’ sort of existence. As  for my dreams, on good days, I still have those, though for the most part they are locked inside my heart. On bad days, I even struggle to blog or fail completely, sometimes for weeks, meaning I have to build up a following all over again. I refuse to let any of this beat me. My Jesus has promised me an ‘abundant life’, which I continue to pursue.